Survival Rate

[Guest orange]

This is a great site. Thank you all for posting so much great info.

My mom has sclc that was found when she had gallballdar surgery two weeks ago. Last Wednesday she had surgery to remove part of the right lung. They believe they got all the cancer that was in the lung but it has spread to the lymph nodes outside the lung (4 of the 12 they checked). Treatment plan is chemo and radiation together. My parents are doing really well with the news and staying very optimistic. I am the only one in my family doing any research and asking any questions. No one in my family realized the survival rate is 25% live for 3 years. I have told my sisters so they are aware.

My question is should I tell my dad the survival rate so he realizes how important it is to get other opinions on treatment?

My mom is open to getting a second opinion at UW Hospital in Madison, WI but I'm afraid she'll back out because she won't want to drive 4 hours for the consultation. I am hoping they have trial studies she qualifies for. She is currently being treated at Bellin in Green Bay, WI but I think the oncologist is out of St Vincent in Green Bay. She would go to Dickinson County Hospital in Iron Mountain, MI for the treatment because it's close to home.

Anyone have experience with any of these hospitals?

Thanks for taking the time to read my message. I'm staying optimistic but also want to be as informed as possible.

Bobbi

[kimblanchard]

No. survival rates are statistics and none of us are a number. Each person has a chance for survival and no one can place a stop time on that that chance. I was given one year, two years ago and am now in remission.

If your parents want to know, they will ask. I asked once and will NEVER ask again.

good luck

jim

[SDianneB]

Ditto what Jim and no doubt others here will tell you -- we are patients/human beings, not statistics. Even so, if there is as little as 1% chance of survival, that's the one I'm shooting for. Someone has to be in that 1%, right? Sign me up.

My goal since I was diagnosed a little over a year ago was and still is quite simple -- to maximize my survival. That may mean another day, another month, another year, another decade, or whatever. Doesn't matter. I fight the battles I need to fight based on what I need to do at the time.

My best wishes to you and your family. This is difficult at times, but not impossible. Hang in there!

Di

[Doughnut]

Hi Bobbi.

I'm not a patient but I agree with what the others have said. It sounds as though things are going well and she is receiving the standard, proven treatment plan. Don't destroy her optimism unless you really feel things aren't been done right.

Welcome here. It's a great place.

Dee

[daggiesmom]

Statistics are numbers. We are people. Personally i wouldn't talk about the stats with your parents. The game plan is what counts now and getting treatment is most important. Tell your Mom that i am a 3 1/2 yr. suvivor of limited sclc and there are many of us out here. Best of luck to Mom.

Joanie

[Frank Lamb]

Bobbi,I too was given only a short time to live in April of 2003.There are many here far outliving the statistics.

It is good that dad and mom have positive attitudes.That along with lots of support are very important in fighting this crappy disease.

I think you should volunteer the survival rates only if you are asked to.Everyone views them in a different manner.

[Geri]

I too am 3.5 year survivor, had I known what my offical chances had been I may not have been quite so optomistic.

Always remember that they're just numbers which are usually way out of date, statistics have to a few years old otherwise there would be no comparision.

Just ignore all the maybe's and what if's.....would've, could've, should've will play mind games and drive you nuts.

Remember all the people on this site who are making it through the treatments and surviving.

There's every reason to believe that your mom can be one us who beat it.

Take care

Geri

[hopeandstrength]

I'm new here, but my dad was diagnosed in May and has had one round of chemo, due for the next round on Thursday. I have to be optimistic. There are people who are fighting this disease and winning everyday. I don't think hearing the stats you have would be helpful, but hearing all the success stories from this board might be!

take care!

[Don Wood]

Welcome, Bobbi! I would ask your dad if he wants to know the statistics before telling him. Some people want to know and others do not -- the patient's wishes should be honored. As for the statistics, they are just averages, and based on old data at that. Each person is unique and responds differently. My wife was given 9 months and she is now 2 years 9 months from diagnosis and going strong. Take care. Don

[Elaine]

Welcome and so sorry you have the need to join us.

I am the kind of person that wants to know and understand every darned thing, and sometimes I find out things I wish later I hadn't found.

I think your mom will either let you all know that she wants to know things or she will let you know that she doesn't--by the things she says and does.

As others have said, people aren't numbers, but I also know that these things somewhat need to be kept in mind.

Surround your mother with love and support.

love and fortitude

elaine

[shineladysue]

Welcome Bobbi,

I just want you to know that you have found the best site on the web for information, and support for lung cancer patients. It's hard to have to be here, but it's wonderful knowing we have a place to go. You will find a lot of knowledgeable , loving , caring folks here. One thing you will notice is that every case of cancer is as unique and the person that has it. That being said... statistics don't mean much to most of us. Aside from that fact, many of the "so called" statistics were taken prior to a lot of the new treatments. Spend as much time as you can studying profiles and gathering information on the site. There's so much offered here. Glad you joined us.

Sue

[Don M]

Hi Bobbi, welcome t the board. I wouldn't say anything about statistics. I went on line a lot when I found out I had cancer, and one of the first things i discovered was the dismal statistics. I have a more optimistic view point now, and would say that I agree wit everyone else that the statisitics are not relevant to any given person.

I looks like your mom has an agressive treatment plan. I guess it would not hurt to have it reviewed by a university facility, but chances are they would agree with the treatment plan. I think I would lean to having it reviewd just to be prudent, but there is no need to bring up statistics.

I hope your mom's treatment results in clear scans results when she goes for her checkup.

Don M

[Guest orange]

thank you all for responding with a resounding "no" on my question about sharing the stat. I now wish I hadn't read the stat but will put it in the past. My mom is quickly recovering from surgery, remaining very optimistic and proving she is a fighter.

I'm sure I'll be on this site often and will direct my parents here when/if they ask for a great place to learn more.

thanks again....I truly appreciate all of the responses and encouragement.

Bobbi

[bunny]

yeah, screw the stats. I signed on here pretty pessimistic myself, "gathering info." etc. my mom told me she takes great comfort from the fact that I am well informed, and promises to let me know if she ever wants any of the info! my brother is terrified by mortality rates and hides them from her at all costs. I see them as a chance to show up some pretty smart cookies.

be well, hang in there. this is a great resource.

xoxo

bunny

[cindi o'h]

Hi Bobbi...

I read your post and the responses.

There is no doubt in my mind that lung cancer is a scary disease. Two of my young brothers died from it and I have been fighting it for 2 and a half years!

I would encourage your Mom to invest in that 4 hour drive to Madison. There are no punches to be pulled when fighting lung cancer. There is a doctor who is world renowned in the world of lung cancer who is especially interested in treating women and lung cancer and who does research and speaking for onc. groups. Her name is Dr. Joan Schiller. I hope that your Mom will be with her or one of her associates. This is the time now when you can do the legwork.

I couldn't wait to begin treatment. I wanted to start the very next day. With the healing time from your Mom's surgery, you have the luxury window of time to get the best treatment available for her.

Since she will be doing chemo and radiation, I would ask about the different radiation techniques available. I heard about a company that is either in Iowa or Wisconsin that has a radiation machine that will allow for the instability of the breathing movements to be more precise in the direction of the beam. Another thing that I would ask the doctor about is if they would recommend lower dose radiation 2X a day instead of 1X a day. There have been some published studies that have shown better survival rates when this method is used.

There is nothing wrong about thinking of survival rates. Just make sure that you are thinking about keeping her among the ones who do survive. She needs to do everything in her power to be in this group, including laughing at statistics and proving that she refuses to be one of them!

Best of luck,

Cindi o'h